Post Interferon Long Term Side Effects on other sites

[DoubleDose]

Here is a site that I stumbled across today while Googling long term interferon after effects.  I also found several other sites as well, also 'chocked' full of people detailing their horrible experiences after using interferon.  This sure supports what many of us have been saying and experiencing!!  It is quite disturbing to read additional accounts, some even worse than the experiences documented here on our forum.  Here is the link:  (you will have to copy and paste)

http://www.lawyersandsettlements.com/forum/viewtopic.php?t=10


I will bet that sometime soon we will be hearing about these issues in the media.  The sheer volume and severity of the problems will cause this to become an issue that will provoke national media attention....and with very good cause!!!  I just don't think we were really warned of these kinds of long term outcomes.  I know I wasn't.

DoubleDose

[Dee1956]

Hi this may have been posted at another time.  It seems vaguely familiar, I thought I would post here in case it can help someone

http://books4freedotcom.files.wordpress.com/2011/04/post-tx-survey-report-2010.pdf

[Dee1956]

Hi Frank, thank you for the full title and URL, I really appreciate.

Pooh, I am like you, glad that I got to SVR however wishing that there was a provision for people who have long term side effects.
Like Melville's wife and others who have "sleep attacks" that is really bad.
People in pain, etc.
I know of a guy who did the old time tx with copious amounts of interferon, before Peg and he ended up in a psychiatric ward.  When his wife asked why they had not been warned, the doctor said, well...I cured him.  She would have prefered to have had a functioning husband.

I believe that there are long term effects for people after treating.  I think that all they want is an answer a solution, something to hang on to.  I wonder if the inf and riba could have caused severe vitamin deficiencies.  A b12 deficiency can cause symptoms like dementia.  Shoot I myself would like an answer.

My best on everyone on here

[Frank J. Perrotta]

Yes pooh, there is only a two paragraph extract that is free here: http://gut.bmj.com/content/61/12/1647.extract

Unfortunately use of the article (for the full day) is $30 and being on full (and the lowest payment of disability) just cant afford that right now...

btw, it wouldnt allow me to post here and they may be able to follow my cookies, lol.

[pooh55811]

That article was an excellent article, Dee. Thanks for posting that link. I think it brings up a lot of the shortcomings of the way treatment is approached by many clinicians and the need for post-treatment follow-up, referrals (as needed), and care.

I am 43 weeks post treatment and, while I feel significantly better than I felt before treatment, in fact, better than I have felt for 20 years, I do still have some lingering issues from treatment (skin/rash issues, some joint aches that I did not have prior to Tx, and lower extremity edema). If I was presented with the same situation (being diagnosed with hep C) in the future, I would still do treatment, and I am elated that I did treatment and that I attained SVR. However, I still wish there was more recognition that people do have post treatment medical issues and I wish that there was more research into this issue. I also wish that there were doctors who were knowledgeable about post treatment problems and willing to examine and treat people with post treatment issues.

I tried to read your article, Frank, but I could not find one that was free.

[Frank J. Perrotta]

Hi Dee,

I did a google for that article and it came up with a MedSlate article which is a pay for medical publication.

The full title is: "New protease inhibitors and direct-acting antivirals for hepatitis C: interferon's long goodbye." by Geoffrey Dusheiko, Heiner Wedemeyer.

There is a two paragraph extract linked at GUT journal (btw this may also be a UK article?!?).

Not sure if the whole thing was copied here or not... and hope this extra bit helps.

f

[Dee1956]

Hi I'm sorry I did not realize it was from UK.
I was trying to find something to help.  Another member on here talked of an article called "Interferon...the Long Goodbye"
I was looking for that when I found the above.

Eric, I really do think it takes at least a year to recover from the tx.  I am happy to hear you no longer have the cramps.  I had those several times a week in the middle of the night.  Thank God they are gone.  So is the cyroglobulinemia.  That was pretty awful as well.

I also would like to see more help for people who are suffering years after tx.  There must be something out there that the medical community could share to help people.  It has been 17 months since I finished triple tx.  I am much improved and thank God for that.